Wednesday, April 8, 2009

I just thought you guys might like to know what it is you pray for every night at 8pm. Jonah had a good night last night, so we were able to go slow enough to take some pictures. This is the current set-up on our dining room table. The house looks like it has thrown up a concoction of baby stuff mixed with a big ol' helping of medical supplies. Sometimes it feels like the walls are closing in, but it's all TOTALLY worth it for Jonah. Our church is finishing our basement room to include lots of storage for all his supplies, a changing table for dressing changes (one high enough that we're not breaking our backs like we are now), and a sink. What a beautiful gift! I can't wait til it's finished. Doing nightly dressing changes on our dining room table doesn't exactly make it conducive to eating dinner. :)

This is Jonah's left leg. It does not look this red in person. This is the knee that was so bad it made you want to cry. It's completely healed, although I think it will always be discolored. The tops of his feet still get blisters most days, so that's why it still looks a little raw. Healing is quick though, and there were no new blisters on his hands or feet tonight. Hooray!

First we unwrap the three layers of bandaging from the leg. Next, we do his exercises (below picture), especially focusing on the ankles since Jonah tends to always pull his feet up. We then wash the limb with soapy water and then rinse with regular water using a bulb syringe. We go through Chux pads (water proof blue sheets) like nobody's business. After washing, we then drain any new blisters (you want to drain blisters after the skin has been cleaned). There were no new blisters on his left leg or foot last night.

After draining his blisters, we then put double antibiotic ointment on any open or raw looking wounds, especially the blisters we've just drained. We then cover the limb in Aquaphor (tried covering the bandages and not his leg, but they seem to stay put better if we grease up his leg rather than the bandaging.) We then put cut up strips of Vaseline gauze (slathered on both sides in LOTS of extra Aquaphor to prevent drying out) between each toe, and then use two to three half pieces of Vaseline gauze to create a little boot on Jonah's foot.

We then wrap his leg using Mepilex Transfer. It usually takes three strips, the top strip having three slits cut in it to make it lay on his upper thigh better. (Whoever suggested that, I could KISS you - great idea!!! Has made our lives - and Jonah's thighs - so much better.) (Keila, sorry I'm using the burp cloth you gave us to cover Jonah's wee-wee. He has peed on me one too many times. I also use it as a burp cloth, just so you know... having washed it thoroughly in hot water, of course).

We then wrap the Transfer using Conco Conforming Gauze. It's much softer than the Kendall Conform we were using at the hospital.

Then, we put Tubifast on top (green stripe for legs, red stripe for arms) to hold it all in place. What I LOVE about Tubifast is that you can wash it and use it over and over again. It gets softer with each washing. Stringy little boogers though after a wash. We spend lots of time cutting the strings off. Thanks for the suggestion about washing and drying them in a lingerie bag. I was driving myself crazy having to pull 10 pieces of staticky Tubifast pieces off of Jonah's blankets.

Matt unwrapping Jonah's right leg... wait for it... wait for it...

Look at that BEAUTIFUL skin!!! Look what you've been praying for. Look what God has done! Praise the LORD!

Jonah had a new blister on the back of his right heel last night.

About to lance the new blister. You have to lance them or they will pull the edges of the skin, and the blister will just get bigger and bigger. And a lot of times they refill if you don't poke enough holes or don't make sure it's completely drained. Lancing is VERY hard to do if Jonah is not calm, especially if the blisters are in a dangerous spot. (I had to lance one yesterday that was on his eye lid... talk about scary. I waited until he was really, really, really asleep. He didn't even flinch).

Jonah's left arm. Isn't it beautiful? Look at those perfect fingers. I just want to kiss them all over. Do you remember how I described his hands before - that the looked as if he had put them in a fire and left them there? They were completely raw - the whole top layer of skin completely gone - and deep red and purple. But look!!! I can't even tell you how amazing it has been watching God heal him - right before our very eyes. Jonah is so close to just wearing a mitten on this hand, but the other side is a little raw from a couple blisters he had. Just waiting for those to heal, and hopefully we'll be at mitten stage.

Jonah's right arm. The process for the arm is basically the same as for the leg - unbandage, exercises (focusing on his wrists, pinkies, but most importantly his thumbs with he keeps pulled in all the time), wash, rinse, dry, Vaseline gauze in between fingers, around thumb, hand, and wrist, Transfer around the arm, Conco Conforming, Tubifast. He HATES having his hands bandaged. It is extremely hard to wrap a clinched fist. Last night he did well. Usually it would be very difficult to get a picture of his opened hand. This hand is in a mitten tonight instead of bandaged. I'm TERRIFIED of what we might find tomorrow, but we have to learn from trial and error. If we could keep him in mittens instead of all bandaged up, he could have more movement of his fingers and thumbs. I'm afraid to keep them completely unwrapped at this point, even if they were completely healed.

After we do the four limbs, we wash and rewrap his torso. His back is blister free and has been since the beginning - even when it's not bandaged. I make him a little shirt with Transfer that goes over his right shoulder, and then wrap the Conco Conforming around him. He does NOT like being picked up for the wrap around. But luckily it's the last thing we do (besides a final diaper change and hair washing), so he gets over it pretty quickly.

Isn't he just the sweetest thing? Worth praying for huh? I cannot tell you how much we appreciate your daily and nightly prayers for Jonah. I know you may just feel sometimes that you are saying the same words over and over again at the same time every night - maybe you don't "feel" them like you did the first time you prayed. But look what you're doing! Thank you from the bottom of our hearts, from the tops of our heads to the tips of our toes. Thank you for praying for Jonah. And thank you, God, for healing our little boy.

71 comments:

Still praying out here on the west coast. From one mom to another, you are an amazing mom. We are all praying for you, Jonah and Matt but it is you that inspire the rest of us every day. Jonah is beautiful and is blessed to have such amazing, wonderful parents. More prayers coming your way!

Patrice - Thank you so much for sharing something that must be such a difficult thing to share. It does make the problems that you, Matt and Jonah go through each day seem more "real". Still praying and still love you all to Heaven and back,

Thanks for taking the time to share with us how things go from day to day. I can't go to sleep at night without seeing if you've posted!

This may be nothing, or it might be helpful, but I sometimes distract my baby with a lazer pointer on the ceiling. He gets so quiet and focused on that light. It occurred to me today that maybe it could help when things start to go downhill.

I continue to pray for you, Matt and Jonah! You are doing a great job - and God is using you even now to encourage and strengthen our faith. Thank you for letting us know you and pray for you!

Patrice - Thank you so much for sharing all that with us. For me, it truly does put it more into perspective what I am praying for exactly. YOU and MATT are amazing parents! I am so glad that you both have such a great support system in your family, friends and church. And, of course, I'm so glad that I was led to your blog so that I get to share in the joy that is your Jonah! It is such a blessing to see his skin healing and looking so GREAT! That little hand is absolutely kissable!Sending lots of prayers from out here in Northern California!

Jonah looks great!!!! Thank you for sharing those wonderful pictures Patrice. Bless your heart, I know you are so busy and still take time to inform us on what is going on. You and Matt are really to be admired and doing a great job. God knew you both were special and would be the right parents for Jonah. I envy Leigh for being able to see him in person next week. I am continuing to pray for healing, good bandage changes and a good report on Thursday. You both are doing a wonderful job. May Gob Bless and keep you.

I am so glad that you showed us how you do that every day. All of the prayers will keep coming. Do you know if Jonah will be able to walk? Maybe that is a silly question but I have wondered that many times. Will the blisters get better as he getter bigger and his skin gets stronger? I hope I am not asking silly questions, just wondering? I will keep the prayers coming many times a day. ALL my love and many hugs!!

I haven't commented in a few days, but I have been continually reading, praying and thinking of you all as always. I appreciate the time you took to post all of these details. I cannot comprehend all that you are doing on a daily basis for sweet baby Jonah. His skin looks beautiful. You are such a special person, full of love patience, compassion and humility. I will continue to pray for you and Jonah and Matt each day. I cannot tell you how may times I think of your family throughout each day.

Sending you so much love from my heart to each of yours.

OH, saying a very special prayer that Jonah's appt. will go well tomorrow with good news.

I love baby piggies and those are the cutest ones I have ever seen! Please kiss the bottom of those piggies as often as possible and know that they (and the rest of that beautiful boy)are being prayed for.

Praise the Lord, He truly is healing Jonah. I'm so honored to be one of your families prayer warriors.

Those little fingers and toes are too cute for words. He sure is a precious little bundle and I know as a mother/grandmother that no matter how much work it is, he is worth every moment of it. One day in the not so distant future those little hands are going to fold in prayer for someone else.

You all are such an inspiration. I'm so glad you shared your pictures with us so we can focus our prayers that much more on exactly what you need the Lord's help with. You will continue to be in our prayers for sure.

Thank you, Lord for answered prayers! You are one amazing Mamma! Will continue to hold your little man close in our thoughts and prayers....prayers for God's love, peace and healing to surround all of you! Rest Well!

What amazing work God is doing. But also you and Matt as parents! Thanks so much for posting pics. His skin and hand are looking awesome! May there be good news awaiting you tmrw at the ENT appt!Also, what a blessing your finished basement will be!Keeping you in my thoughts and prayers daily!

Dear Patrice,I am new to your site. I am a missionary in Mexico an just by God's guidance happened upon your site tonight. Kinda like a maze. I have spent the past few hours reading every single entry and am now "hooked!" Anyway, about a year ago, my 4 year old daughter was badly burnt in an accident here in Mexico. She went through those same bandage changes and there were many nights I thought, I just can't do this to my daughter. All the while she was screaming, "YOU MEANIE!" Well, I did get through it, and she did too. She still has some scars and we still remember the dressing changes. I am only telling you this to say, God got me through each day. He never gave me more than I needed for each day but he always gave me what I needed to make it through each day. He gave her what she needed for each day as well. I am going to add little Jonah to my prayers and I know He will have just what he needs to make it through each dressing change! You and Matt are so precious and your faith is a huge testimony to all those around you! I was reading the entry where you were saying how you just wanted your baby to be healthy and you were tired of all of this. It was one of your "down" days. Oh precious, precious Patrice, there will probably be other days like that, but please know that I am going to take it upon myself to pray for you. I feel as if God has plopped you right down in my lap for a reason. I will be moving to Wake Forest,NC in June of this year. I know noone. I will be living there for a year while on Furlough. Maybe, just maybe I can be of some help to you during that year. Just wanted you to know that you are being prayed for and tonight while you are lying awake playing with little Jonah and wondering about all of the things God has planned for him, just remember.... Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future. Praying for you all! Missy Wood

I was just about to complain today, about having to Aquafor my daugther's eczema spots everytime I wash her hands and after her bath. Then I was humbled by what you have to do everynight. Thank you! You guys are doing awesome.

Just a quick note about popping Jonah's blisters---and please know that this is in no way a criticism, just passing on some of our life experience. :)

We have found that Carson gets two types of blisters:

1) the yellow/clear blisters

2)the red/pink blisters

Based on information we gathered from some other EB parents and EB patients, we chose not to pop the pink/red blisters. In our six years dealing with this (of course acknowledging that Carson is EBS, not RDEB) we have found the pink/red blisters rarely, if ever, spread. (I think Carson has had one that spread just a little bit)

They are pink/red because they are deeper and filled with "healing fluid" AND blood, as opposed to the first type, that are fairly close to the surface and filled with just the clear yellow "healing fluid."

It has been our experience that popping the pink/red blisters rarely helps because they just fill back up again.

Just something you may want to research and prayerfully consider.

I know you probably haven't had a chance to look at our blog, but if you do....the Feb.23 post has a slideshow of pics, including some when he was in the NICU.

Oh...almost forgot. I understand you have some wonderful members of your church doing some work in your basement. We were blessed that in our bathroom, our countertop was as long as a counter with double sinks, but we only had one sink down on the left side. Therefore, we were able to get the bathroom nice and toasty, and do his wrap changes right next to the sink. Just a little "design" tip if you are still in the early stages of the work. Although, if we were to go throught it again, I would have that counter and sink raised to "changing table" height. LOL.

It was so nice to actually see how Jonah is doing. You are doing such a marvelous job, and Jonah is so blessed to have such wonderful and loving parents. Jesus is working some sweet baby miracles in Jonah and I will continue to pray for that little darling. I hope you're greeted in the morning with some blister-free hands. Jonah is such a treasure!

WOW! This is so amazing! The commitment and love you all have for Jonah is awe-inspiring and has left me speechless. I used to think changing my 1 year olds diapers was tough, but wow you sure put me in my spot! I know I've said this almost every time I've commented on your blog, but you are soooooooooo inspiring and are a true admiration. I wish I could be a mom just like you, so patient, so loving, and just so motivated.

Jonah is looking great! I'll be praying and praying for each day to get better, he's so tiny and so beautiful. He is definitely one of God's greatest little miracles!

WOW, thank you for sharing your life so candidly with us. Thank you for helping us learn more about EB. You are amazing parents and Jonah is so lucky to have YOU caring for him.I am continuing to pray for you,<><

Thank you for sharing that Patrice. What an amazing thing you all do every single day for your little bundle. Is he eating better? He looks nice and chubby and I love his little cute legs and hands. Prayers continue.

That was amazing trip you just took us on, Patrice...thank you so much for sharing it. For those of us who haven't ever dealt with EB, it was a lesson...I feel like I understand some of your other posts even better now (when you would talk about dressing changes, and the things you use, etc - seeing really helps). You guys are still in my prayers, and it's so great to see all the prayers being answered...

Wow - thanks for sharing that! I knew you guys had a lot to do with bandage changes but this really helps to put it in perspective. Jonah is so blessed to have dedicated loving parents like you! I'm so happy to see blister-free arms and hands. We'll pray that they stay healed. Love to all of you!Jill

God is amazing! I found you, your story, and blog by way of Stellan's blog. Although I don't know MckMama or you I feel like I do through your blog. You, your family, and adorable, precious little Jonah are in my daily prayers and thoughts.Thanks for sharing your story. Jonah is blessed to have a mom, and family, as wonderful as you!

Worth praying for? He is worth SO MUCH MORE! Words will never express his worth, to you or to GOD! Hang in there. You sound much better than the other day. Keep us posted when the article comes out. Would love to see/read it! Jennifer in Southeast, NC

Incredible. Y'all are doing great and I'm so glad I found your blog. It has been an honor to pray for you guys and it will continue to be our pleasure! May God continue to bless your precious little man!Daisy (alabama)

WOW!! I see more and more what wonderful parents our Lord has given Jonah!! What a sweet little boy I just want to kiss those little cheeks of his!! Many prayer are going to our Lord for the complete healing of his blisters and body!! What a wonderful God we serve. Thank you Jesus!!

wow, his skin looks so much better! i can't even believe the changes, especially with that knee and leg after he was first born. so worth the trouble to see his skin in such a great condition. you guys are amazing. thanks so much for sharing this process!

Your strength and grace is amazing! I have followed your family for over a year now and decided to finally de-lurk and let you know that I pray for your entire family everyday. Thanks for sharing your Jonah with us!

Oh, Patrice, he is so beautiful! What a perfect creation of God! I love those little fingers and toes...what a sweet boy. Thank you so much for sharing those pictures...still praying for it to get easier with each passing day. God is soooo good!!!Love,Erin in VA

Every night is worth praying for. Jonah has touched my heart so much. i check in on him everyday. You and your family amaze me at how you keep your faith so strong! My fiance even asks about him now... He watches as I read sometimes. We will continue to keep you in our thoughts and prayers.

Wow....your words and pictures just amazed me with what you have to go through each evening. I just cannot imagine how enormous of a challenge this must be. However, you are so right, he is JUST beautiful and adorable and looks so snuggly and cute. God picked you two to be Jonah's wonderful parents and he's lucky to have you both and I know you feel equally lucky. I continue to pray for you daily and sending you all lots of hugs to give you strength.

Thank you so much for the pictures - it was hard for me to understand some of the things you talked about previously, but I understand much better now. We will continue to pray for Jonah at his dressing changes. You must be doing a great job - he looked so relaxed.

Praying for you and for strength. I know that you are happy to do it, but that has to be exhausting! What a wonderful gift your church family is giving you...can't wait to see pictures! Bless you friend!

I am sure you don't have time to answer every individual question, but next time you decide to go through and do a Q&A post, maybe you could clear this up for me -

It sounds like the way you're talking, Jonah will eventually get to a point where his skin is not as susceptible to blistering. Is that true? Will he heal so that, although he does have to be careful, he does not have to take these extreme kind of precautions?

Been following you and Jonah from day 1, and keeping you in my prayers. We all love and miss you guys very much. Keep your head up :)

Thanks for sharing. As the mom of children with unique needs, I think it is great that you share a little insight into what you have to go through - out of love - for this precious baby. Most people don't understand the day-to-day things that are needed. God bless you as you continue on this journey with the Amazing Jonah!!! He looks sooo much better than in his newborn pics, and am praying for continued healing. And to keep from posting on this and the next blog entry, I am praying for your trip to the ENT today. Keep your eyes and hope in HIM.

God Bless, and give that sweet smelling cute as a bug curly head a kiss from Oklahoma.

WOW, I cannot believe how GREAT his skin looks! Fantastic, just fantastic. And it looks like he is healing well, which is such a good sign. All your hard work and the pain of watching him in pain is paying off, his skin could look sooo much worse, but you are doing and amazing job caring for Jonah.

He is absolutely beautiful, and blessed to have you as parents. I pray for Jonah every day that God fully heals him. God bless you both for having the patience to deal with his illness. You are truly special!

nothing short of supernatural mothering instinct enables you each day, Patrice. Even though some moments, 'caregiver' may be what you feel like. A simple caregiver can go home, clock out and not look back.

You guys are amazing! I can not imagine having to do all that you are doing. Just remember that everything you are doing is for your beautiful little boy and when he is older and all healed ~ you will have some stories to tell. :o) May God continue to give you the strength to care for your precious baby and may He continue to heal Jonah quickly!

Jonah is so precious and his pictures are so cute!!! I can't imagine the daily bandage changes but obivously you have them 'down' -- you are a incredible person and I have no doubt God is and will richy bless you and your husband!! Give Jonah a big snuggle hug for me!

Thank you for sharing the photos of Jonah. Wow, no wonder you sometimes feel overwhelmed! Sweet Jonah looks like quite a trooper during the dressing change. You and Matt continue to do a wonderful job; and of course, Jonah continues to be as cute as a button! Praying for quick, painless dressing changes.

The prayers will continue to flow. Thank you so much for sharing your daily routine with us. Both Jonah and Stellan are close little boys to my heart and I pray for their healing with so much of my heart.

Thank you so much for sharing the details of Jonah's dressing changes with us. And I loved seeing those precious fingers and sweet little toes!!! What BEAUTIFUL skin Jonah has!!! So great to see what I've been praying so hard for!!!! God is so good!!!! Will continue to pray with each day and each night and each dressing change, your lives will be richly blessed, one finger and toe at a time!

I can't imagine going through this everynight,and the struggle that Jonah has to go through. The pictures are great and Praise The Lord for what he has done. It is great seeing the progress he is making. That hand was so sweet and beautiful. The Lord has done so much healing. Thanks for posting the pictures to see what we have been praying for and the encouragment you must have through this. Hang in there as we continue to pray for you three. I will continue to pray each night. Try to rest in the Lord for you strength.

WOW.....I've been following your blog for quite some time now and knew you guys were going through a lot but I had no idea what an intense process that was each night. Of course I still don't REALLY get it (no one does but you guys!) but this really made it more clear.Praying for you and your family...you're an amazing woman and a great mommy! I'll pray for you each night at 8pm as you suggested :)